In July 2009, our beautiful son Adam was diagnosed with high-risk neuroblastoma, an aggressive children's cancer. Despite four years of treatment in the UK, Germany, and America, Adam sadly passed away on 11th July 2013 at home with his family. Visit Adam's Appeal at http://adamsappeal.org.

Tuesday, 10 August 2010

Gollum, a triple rotten egg and a refund...

Adam has spent much of the time tearing around the ward since his arrival at hospital yesterday afternoon. There was a brief interlude today due to surgery to fit a vascath ready for stem cell harvest; he woke up from the general anesthetic around 1pm whilst I was visiting at lunchtime. However, by this evening he was back on his feet, albeit his gait is more a hunched over shuffle now he has a catheter inserted up through his groin area. I (affectionately) refer to him as Gollum from The Lord of the Rings and walk behind him mouthing ‘My Precious. My Precious’. Obviously most people that witness this think I am a little disturbed and need help, but I find it amusing.

Last night after becoming a triple rotten egg (an accolade Adam bestowed upon me after I was last running back from the playroom to his bed three times in a row) I was reminded of a year ago when Adam was an inpatient and did little else but lie motionless on his bed watching DVDs. Alison and I used to watch a little boy having running races with the nurses and, looking from him to Adam, surmised that he couldn’t possibly be under treatment and must be a relative of somebody else. Now, I don’t know whether that boy was in fact a patient, but there must be parents on the ward now thinking the same thing about Adam. Only this evening I was approached by a parent to whom Adam had been explaining that he was going to America (I wasn’t present at the time and how he got on to the subject I have no idea). This father couldn’t believe that we were contemplating going abroad and that there was no way that we could get the treatment at The Royal Marsden. His parting comment to me was that to look at Adam and see him running around he would never have thought there was anything wrong with him. And he’s right. It’s heart warming and heart wrenching at the same time.

Moving on to the more boring stuff, Adam’s first course of Plerixafor is given by injection into the stomach at midnight tonight and the first harvest is scheduled for tomorrow morning (it has to start within 10 hours of the drug being administered). Since my last post there have been further developments on the funding front. After the intervention of the local press, the PCT meeting was moved from the earliest available date (Wednesday) to Monday. Earlier today we heard that Adam’s treatment had been approved and as a result the hospital are now in the process of arranging a refund back to The 2Simple Trust. I think the fact that he never received the drug itself as a private patient probably makes the refund process simpler. So it all seems to have worked out in the end ... we just need to get gazillions of stem cells now.

'We wants it, we needs it. Must Have The Precious. They stole it from us. Sneaky Little Hobbitses.'